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the risk of stopping hormone therapy.

11 REPLIES 11
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Member

Re: the risk of stopping hormone therapy.

Hi
I am in the same position 2 lumpectomies and then mastectomy, invasive lobular, grade 2 none in lymphs. Jan 2016
First Letrozole which really effected joints and I was so low. Could hardly walk. Had a break been on Exemestane since last October, seemed easier at first was so pleased thought I could come, but then started in shoulders neck head hand and feet. Every morning can hardly walk, I 'm 65,( but a young one) she says laughing to herself I used to be !!
Was also leaking, and crying all the time, life just seems very hard at the moment and I sailed through all my treatment.
The thought of feeling like this for 5 years never mind 10 devastates me.
Have been off for 3 weeks and do feel better still a bit achey but have joined the gym
My Oncologist says if I was to exercise every day I could come off the tablets, it's such a frightening situation, quoted me an 83% chance if recurrabce with 4% more with the tablets have not tried Tamoxifan .as yet, what do you do it's such a risk, so worried. Best wishes to everyone with this disease thought I was doing well but really struggling, got good support but they just want to me say I'm fine .
Highlighted
Member

Re: the risk of stopping hormone therapy.

Ok, this may be a controversial one but my attitude to life is that it is about quality rather than quantity. I am on a 6 week break from Anastrozole at the moment because the side effects were impacting my life too much - constant hand pain, fingers swollen and stiff, hands weak, enormous difficulty sleeping and generally fuzzy headed. I am self employed and I literally can’t afford to do a bad job - hence the decision to stop the meds for a while.

 

I know AIs do a very valuable job but I think it is a judgement call, that will be different for everyone depending on their circumstances and situation.

 

I should say upfront - I am single (husband left me 6 years ago) and I have no kids, so I live for my adorable dogs, my friends and my dad. Oh and eating cake. 😉

 

xxx

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Community Champion

Re: the risk of stopping hormone therapy.

Treeze, I'm also single (partner decided when I got my diagnosis that it was a good time to leave!) and I too, do not have the energy or inclination to find someone else. Need to concentrate on looking after myself and my kids. Sadly, I think you have to be more realistic with what you can do, and just look after yourself. It's very difficult, I know, but sometimes try to count your blessings xx
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Member

Re: the risk of stopping hormone therapy.

Recently let go one aft a week at work and although I was given a valid reason I know that someone else was working faster and more efficiently than I'm now able to so the work isnt there for me.I feel as if theyre secretly thinking I'm unable to do the work, which I can understand.
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Member

Re: the risk of stopping hormone therapy.

I try to look at it that way Sue..sometimes I succeed.I just feel I'm falling short on so many things.My children are grown up and of course I want to be here for them and my grandchildren.When I became single I had high hopes I guess and lots of possibilites and hopes for the future.I have things I "have" to keep doing that I never would have thought about..working for a good few years yet for instance which was always a pleasure not a chore.Having energy to try new opportunities..wouldnt even consider looking for a relationship as I feel too tired physically and mentally to cope with someone else.Limited to work opportunities as I cant lift or stand for long, brain fog etc.Evenings out with friends although I go tire me out.Probably expecting too much.
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Community Champion

Re: the risk of stopping hormone therapy.

Jax

 

I know that there have been ladies on here who have posted how different brands affect you and the side effects. 

 

You can ask for your Pharmacist to give you the Accord brand when you put your form in or go to another pharmacist. I am on tamoxifen and have always had the Teva brand, my pharmacists attitude is you are on this for 10 years so if that is the brand that works for you then that is the one he will give me.

 

Helena xx

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Member

Re: the risk of stopping hormone therapy.

I am only four months in to anastrazole, the furst three months on the Accord brand I was fine, very minimal side affects. Picked up my next prescription, a brand I have never heard of manufacturerd in Spain. This last month has been horrible, the aches and pains have hit big time, feel like a 90 year old rather than 57! Could this be the different brand or my body getting used to anastrazole? Have been thinking if this is the way forward do I want to continue with hormone treatment, which in the back of mind I know I have to!

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Community Champion

Re: the risk of stopping hormone therapy.

Treeze, I agree. A friend once asked me if I've changed my outlook since my diagnosis ? Do I live life to the full? Sadly not. Each day is a struggle, and I do what I can. My aim was always to be able to look after my children. And that I can do. Anything more than that , is a bonus.

Sue xx

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Member

Re: the risk of stopping hormone therapy.

I've never really seriously considered stopping anastrozole but after 20 months I am coming clisr.Have persuaded gp to give me some amitriptyline to try to help with the pain.Its now in my feet and I can hardly walk at the moment for pain.Also in knees ankles hips and back.I would retire if Icould afford but actually know this is not "me" talking..the me that was active, taking classes and living an active life.I know I'm glad to be here and I do get pleasure in life but wake every morni g thing oh no another day of pain a d that cant be right from one tiny pill.Instead of enjoying going out with friends and family I grit my teeth and bear the pain it will bring.Lower myself exhausted onto the couch like an invalid after 3 hours work.Only really at ease on the couch or bed.Scared of tryi g others and getting hair loss..vanity yes but with my new fat body and floppy tummy I have to hold on to what I have! Life is now an endurance test from exhausted mornings to sleepless nights.With my diagnoses it doesnt look good if I stop and my bc nurse told me at the beginning to try to persevere and I am..can hardly walk up stairs or sit at the cinema even. Good luck with your decision.God bless us.
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Community Champion

Re: the risk of stopping hormone therapy.

Hi JAH,
It also depends how you look at it. From what I’ve read, NHS Predict on looks at survival at 5 & 10 years, not those who’ve had a recurrence during or after that timeframe. I’ve also read somewhere, that hormone treatment reduces the risk of recurrence by up to 50%, with most of us falling between a 10-40% recurrence risk anyway.
Hey ho, it is a dilemma. I’m on tamoxifen & have stayed on this rather that go onto AIs, with my oncologist’s & surgeon’s agreement, as it is protective of bones & I’ve been fine in it - could this be an option?
As ever, do what’s right for you.
Wishing you well with it all.
ann x

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Member

Re: the risk of stopping hormone therapy.

I don’t have an answer but am in a similar situation - am having a break from Anastrozole because the side effects were becoming too much. Such a difficult decision to make but I guess it will be different for everyone.

xxx

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Member

the risk of stopping hormone therapy.

I had an early grade 2 stage 1 ductal breast cancer, no lymph node in volvement (3nodes removed) in 2014. Lumpectomy, radiotherapy and letrozole. I have moved into moderate osteoporois now, hair thnning on top of head and numerous ligament issues, buttocks, shoulder, elbow, coccyx. I changed to Exemestane a month ago after a month break from treatment. I am tempted to discontinue and hope for the best. I have read the Predict research paper and identified my risk. It seems that A.I's give me 1% greater survival over a 5 year period and 2% if I take it for 10 years. Problem is, I can't figure out whether this is suh a small risk that I could come off it or if 1 in a hundred is a big risk. I am 66 years old now. How do other people make this decision. Sometimes I just want to get of the meds and then I think, well better to have arthritis and osteoporos and thin hair at least I woud still be alive and not dying of cancer. How do others make the decision - one way or another. Medics simply say that although there is only a low risk of recurrence, and low benefit from treatment, breast cancer is so unpredictable that you cannot be too sure... what to do?